OP0004 LUPUS100.ORG – A STEP CHANGE IN ACCESS TO QUALITY INFORMATION FOR EUROPEAN LUPUS PATIENTS
Authors: Z. Karakikla-Mitsakou, A. Cornet, I. D. Povilaite, M. Olsen, K. Blomkvist Sporre, N. Z. Serrano, M. Misuno
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Quality of information on lupus on the internet is a real issue. ''Word of mouth", rumours, unchecked data, or unconfirmed research increase confusion, create anxiety and can lead to incorrect actions. Patients need access to quality information about lupus. Therapeutic Patient Education (TPE) is a key part of the self-management of chronic conditions; an essential component of TPE is access to valid information. Most patients in Europe don't speak English. <h3>Objectives</h3> To provide access to quality information on lupus online, in the native language of 95%+ of the European population. <h3>Methods</h3> The first step was to get the project endorsed by specialised lupus doctors, ERN ReCONNET. The French book "lupus en 100 questions" (initiated by FAI2R) was used as a starting point. Patients from the Lupus Europe Patient Advisory Network (PAN) and doctors worked together to create the English version. The least internationally relevant questions were removed to make space for new questions suggested by Lupus Europe's PAN. Answers for the new questions were constructed collaboratively between patients and doctors. The other questions were translated to English, updated where needed and adapted for international use. The resulting English document was distributed to ERN ReCONNET SLE working group doctors and to all PAN members, and feedback was incorporated. This master version was then put online and served as starting point for an ambitious multilingual translation. The translation process included generating an initial draft translation through Deepl Pro, and then upgrading this by a Doctor-Patient native speaker team. In parallel, a process has been established to collect comments and suggestions so that content can be maintained and upgraded on a continuous basis while keeping all language versions synchronised. <h3>Results</h3> lupus100.org in English was launched at the European Lupus Meeting in October 2022 and has to date received 8,900 visits. 18 translations have been completed and 10 of them are under final validation. The international launch of the multilingual website will take place on May 10, World Lupus day. <h3>Conclusion</h3> This effort will provide access to quality information about lupus to 95% of European lupus patients in their own language, eliminating a big barrier to quality information. Thanks to the effective collaboration between patients and doctors, quality of information can be guaranteed and information truly answers the patient concerns. Both national groups and the ERN network of doctors will ensure effective dissemination, so patients in all European countries are aware of the initiative. <h3>Reference</h3> [1] Zangi, H.A.; Ndosi, M.; Adams, J.; Andersen, L; Bode, C.; Bostrom, C.; van Eijk-Hustings, Y.; Gossec, L.; Korandova, J.; Mendes, G.; Niedermann, K.; Primdahl, J.; Stoffer, M.; Voshaar, M.; van Tubergen, A. EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis. 2015; 74 (6): 945-62 DOI: 10.1136/annrheumdis-2014- 206807 <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> Zoe Karakikla-Mitsakou Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies., Alain Cornet Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies., Ida Daiva Povilaite Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies., maria olsen Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies., Karin Blomkvist Sporre Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies., Nuria Z Serrano Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies., Magdalena Misuno Grant/research support from: None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Bayer, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Lilly, Merck, Novartis, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies.